Finally opening up about my ADHD and Autism

[Leenie0811]

Hi everyone,

Last week I had a complete meltdown right before a tattoo appointment and I broke down to my partner telling them that my doctor confirmed my ADHD and Autism but I’m waiting on assessment for the official piece of paper. I felt like such a weight had been lifted but every time I now say “well now you know this is down to being neurodivergent/adhd/autistic” the responses I’m getting is stuff like “do you have to mention this all the time” or “not everything is linked down to a doctor telling you that you’ve got something”

I’ve literally felt like screaming because for the last year or two I’ve been trying to pick up the courage to say to my GP, I have 4 brothers 1 has add and autism, one has adhd and the other is autistic. Because my parents only saw male symptoms I was overlooked, even now my mum tells me I’m not like my brothers and says I’m bipolar or something else. It’s so invalidating especially when your GP looks at everything and says yes I’ll refer you. After years of not getting the right help finally someone listens but the people closest to me I’ve felt so much worse talking about it to them. Now I just wait in anticipation for my formal assessment, it’s on my medical record yet until I get that piece of paper they won’t believe me.

Has anyone else had this? I feel so alone and I’m trying to celebrate the acknowledgment of neurodiverse traits/figuring out my own brain with next to no support. Literally the support I have is from places like here or friends I’ve made on social media groups.

Sorry it’s a bit long, hope you managed to read it all, thank you for reading!

Leenie x

[F_RN_Dx_at_39]

A friend of mine with autism and ADHD showed me this series. I think you'll like it. youtu.be/NHdmcU2vmMQ(Not working as expected?)

[Leenie0811 in reply to F_RN_Dx_at_39]

Thanks for the link I just watched the trailer and it looks so good! Where can you watch it is it on Netflix or anything like that? I have prime and Netflix

[F_RN_Dx_at_39 in reply to Leenie0811]

I thought I was fantastic. The second season gets better and the last few episodes I think you'll appreciate.I really like the main actor/producer and just started watching his other series called Please like Me.

You can sign up for a 2-week free trial of Hulu without commercials and power watch them all. Just don't forget to cancel the subscription, or you get to pay for it. Even if you pay for the subscription, it's way cheaper than paying for it on Amazon Prime, at least for me.

[F_RN_Dx_at_39 in reply to F_RN_Dx_at_39]

At least those are the rates in the US.

[Leenie0811 in reply to F_RN_Dx_at_39]

Ah cool, I’m in the U.K. so I’ll have a look which is cheaper and if there’s a free trial then I’m in 😂

[humble-rasberry]

Hi Leenie, first of all congratulations! It’s such a mindblowingly unique experience to finally get the answers and have a reason for everything that just feels off. I’m sorry you feel this reject from your family, especially with known diagnoseses with your brothers. Women have it so rough!

I wanted to share my experience with my family since it might feel similar for you. For years before I got an adhd diagnosis I had been researching everything possible related to mental illness, personality disorders, disabilites, etc. because I just KNEW something was different about me than other people and I just couldn’t put my finger on it. But it was getting me really burnt out trying to keep up with the “normal” and I just didn’t understand how it looked so easy to everyone. I assumed it was depression, I was in college and it felt like it made the most sense. When I told my parents that I think I am depressed, their responses were similar to yours like “no you don’t, you do well in school how can that be?” kind of things. Super invalidating. But they come from a different generation where thay stuff isn’t talked about as normally so I brushed it off. I was in college, so I started going to the free therapy they offer that was okay, but while I did have depression it wasn’t explaining all these other issues. Finally I got to research inattentive ADHD and was like omg. That’s it!! I tried talking to my parents about that, they did not believe me at all. They didn’t want me to talk to a doctor about it and told me I was just overwhelmed with school or just young and confused. I was heartbroken. I finally got the courage to go against them and make an appointment with a doctor because I knew in my heart that this was the answer. And when I got the diagnosis they were super surprised. It was a weird thing to talk about with them at first but I started sending them articles about adhd symptoms in women and would point out things that were linked to my adhd, and they were hesitant, but after some persistance they opened up and accepted it. It was a long journey but after I forced them to see my experience then my mom figured out she also had adhd. And my dad definitely has undiagnosed aspergers which can make it hard for him to be objective and consider others emotions. But he’s a fact-oriented person so I knew sending him data and research would be his way to understand.

I guess I don’t have much advice besides to take it slow with them. I don’t think it’s that they don’t want to believe you, it’s probably more a reflection of themselves with the “Well if I didn’t know you had adhd then my parenting was wrong this whole time and I’ve failed you” mindset that can make parents defensive. They are supposed to be the ones that know you best and take care of you so it can feel blindsiding for them, especially if they are comparing your experiences with your brothers. Of course this puts a lot of stress and feelings of invalidation on you, but just stay compassionate. You will have to fight for yourself, but they love you and will come around and support you when they feel ready. Take care of yourself and learn everything you can about adhd it will be your life saver! Best of luck my friend

[Leenie0811 in reply to humble-rasberry]

Wow thank you so much for such a comprehensive reply, I really appreciate you taking the time to write this. Honestly your experience is like mine and I really do think my mum has the same as me but she’s also dyslexic. She’s never been diagnosed for any of this but has been treated for depression since being a teen and when I’ve said some of my symptoms/experiences she’s said “well I have that it’s just something we do” I really think my mum feels guilty, when my brother was diagnosed with ADD, dyslexia and dyspraxia she was blaming herself because she carried him and maybe she did something wrong. My other brother has dyslexia and dyspraxia, she feels the same with him so now hearing her daughter could be the same I think she’s really feeling it. I’m trying to tell her how females present differently to men and I think over time she will get it.

My main focus is to become more comfortable in my own skin, I’ve masked for such a long time I just want to be me, be real and authentic!

[DW44]

Yep some people didn’t believe me at first because I’m really good at masking and have done since I was 5 years old, and I’ma girl so the symptoms are different! So then I educated myself on the symptoms and characteristics of ADHD so I could justify/ defend myself (not that I owe it to anyone but that was at the beginning) and now I’m a lot more comfortable with it all because I know what my strengths and weaknesses are and ADHD isn’t a bad thing it’s just different to the way other people think and work. I’m lucky that my Mother DID notice the similarities between myself and my brother with ADHD and that’s how I diagnosis.

[Leenie0811 in reply to DW44]

I can agree with you there with the masking, my brothers all have short tempers/very loud whereas when I was a child I would be alone playing/very quiet. The only thing was that I know is different and I still struggle with now is selective mutism and I get very upset. I would try so hard at things because I wanted my parents to be proud, if I couldn’t do it I’d burst into tears (most of the time run away and cry) it was very hard to calm me down. I now realise that’s when I couldn’t mask anymore but at the time I’d think I was so stupid, always thinking what’s wrong with me? Right now I am focusing on just being me and being authentic, finding out who I really am rather than what I think others like. Hopefully that brings across my strengths/weaknesses too.

Thank you so much for responding, it means so much to me that people have read and taken the time to reply!

[DW44]

I’m very sensitive too, I used to cry very easily as a child (and still can sometimes)!It’s worth doing your research to find about the condition, how it affects you and useful strategies to help you. And learning to be yourself as you said! I’m still working on it but I’m getting there.

[Leenie0811 in reply to DW44]

Oh tell me about it being a child I remember crying and dad saying what you crying for? Me replying I don’t know and getting a cuddle, I really miss my dad as he passed when I was 20 but he was really good at helping me even though he didn’t necessarily know I had these issues he just understood me. I’m 29 now and still wish him here!I’m the same as you researching whilst trying to not hyper focus on it but notice when I need that time for processing. My partner sometimes helps but really I think he just wants me to accept it and carry on but it’s such a big thing. Finding others like me has been the best thing realising you’re not alone in all this x

[DW44 in reply to Leenie0811]

Aww I’m sorry for your loss! And at such a young age, that’s must’ve been really difficult for you 💔 I’m glad he was there for you, supportive parents are the best!Sounds like you’ve got a healthy balance in doing your research but not being fixated on it, coz at the end of the day it’s a significant aspect of your life but it doesn’t define you, you define you! It would be good for your partner to research it too or at least for you to educate him (which I’m sure you have)

Yes agreed!!! It’s acceptance and permission to be ourselves, and it breaks down the stigma. We don’t need to be “normal”, we’re our own normal (which is much more fun) 😄

[Leenie0811 in reply to DW44]

He says he’s done the research but I can see from replies that it’s probably not from people that actually have adhd and autism like their lived experience or how to manage life in a neurotypical world. Whenever I mention it it’s the same “yes we know you’ve got it no need to focus on it all day every day” saying that I think he just wants me to carry on like it’s nothing but I can’t. Today has been tough I feel like I need alone time but he’s being so sweet and loving. I hate masking infront of him but I don’t want an argument. Starting to pick up when I mask and when I’m able to be me has been massive and I do miss my dad so much! Sometimes I just think of him when I’m getting all worked up and it gives me some peace in a very muddled up world x

[DW44 in reply to Leenie0811]

There's a difference between reading the facts and internalising them/ understanding them in real life when you need to apply that knowledge. He's never experienced life the way you have. This only helps for ADHD but try showing him this video youtu.be/kWOavIudlXc(Not working as expected?)

You can say that you don't want to focus on it, but being aware of your struggles/ issues is half the battle, you can't solve any problem if you don't know what you're trying to solve.

I'm sorry your day was so difficult but at least he's being kind and giving you attention and not the opposite! Be open in your communication of what you need from him, don't be afraid to say "I love you but I need some alone time/ space right now". Ideally you don't want to mask from your partner, you want to feel comfortable to be yourself. I'm lucky that my boyfriend unofficially has ADHD too so I don't feel the need to mask with him.

Aww I'm glad thinking of your Dad gives you strength! He would be so proud of you!

[ShortyKat]

I don't have a brother, but I do have a sister who is very brilliant and things are so easy for her. Of course, now I know as an adult that not everything is easy for her. It just feels like that. way. I've always known that something was wrong when you lose things constantly, and drop things, is that a part of ADHD? Anyway, I was diagnosed at about 18 or 20. Now, at 53 things are all blending together. The worst, used to be when they had us read out loud in hs. Thankfully, after so many times bursting into tears the teacher reversed the order and wouldn't get to me. I was very happy he did that, for me. I imagine, he just wanted to get on with class, but I could have hugged him but thankfully I knew that isn't appropriate.

[Leenie0811 in reply to ShortyKat]

Reading out loud I get that, didn’t cry but couldn’t speak loud enough and would hold in any tears but they stopped asking me because I think they could see the stress it caused. My mum compares me to my brothers because I have a good job that’s well paid and I’m doing uni on the side they didn’t get grades like I did but actually when you look at it I tried so much harder than them and my dad was around to motivate me. I don’t speak about my work or uni struggles to her because she hasn’t worked since I was born (now 29) and takes no interest unless I get a pay rise. She actually has a lot of traits I have but telling her that it’s like oh so you think I gave you and your brothers all these problems? It’s like no but you’re exhibiting similar things, it’s just something I’ve picked up on.

I looked to dad as my inspiration, he worked his way from the bottom to a director of a company, always inspiring and positive feedback/rewards for putting the work in. Looking at my friends at school I had to go to after school classes, study at home longer and even now at work I’m constantly giving everything my all in order to progress. Nobody sees the after effects except my partner who doesn’t get much us time because I’m so exhausted.

Really hope this can all balance out going forward! Thank you so much for replying to x

[dubstepMaul]

Hi Leenie0811. I just wanted to chime in as a mom of two adult adhd kids. My son was diagnosed when he was very young, he had a terrible time in school and never would have gotten thru without meds. My daughter however loved school and did great all the way thru. She did not have struggles until college which presented as anxiety and depression. Fast forward several years after that she was diagnosed with ADHD which of course we now understand presented so differently in her being female. She was experiencing emotional deregulation and mentally exhausted daily at her job trying to maintain "normal". I did not feel like I failed her as a parent but to be honest I did feel bad that I missed identifying it when she was younger. She does not feel like I failed her, she understands that I did the best I could with what info I had at the time. Her brother's needs were so great and my husband was not on board at the time with believing the diagnosis or assisting with any of his educational or behavioral needs. I was on my own with it. My daughter is 33 now and my son is 30, she has a BA degree and a career, he did not complete college. I am proud of both of them, they are amazing individuals who know themselves very well and their strengths.I wish you all the best. Hugs to you! 😊

[Leenie0811 in reply to dubstepMaul]

Thank you for sharing your wonderful story, I feel like your daughter is exactly like how I’ve been. Diagnosed with anxiety/depression and the emotional dysregulation has been awful. I really hope my mum doesn’t feel like she’s guilty because I know she’s done what she could and like you my brothers were so much more demanding than me. I like to be alone and can be left without much interaction, my brothers actively pulled on her when we were growing up together. I look back and think it’s okay that’s how we were but I hope she can accept I represent differently in time. This has made me feel so warm inside knowing your perspective as a mum, thank you x

[dubstepMaul in reply to Leenie0811]

😊

[ShortyKat]

I am 53, so I don't know if any one was even aware of ADHD at the time. I have to do more investigating.

I wasn't considering myself hyperactive, though I can be at times. It is also not knowing when I can speak in a conversation. Either talking over people accidentally or losing total focus if I am at the end of a table. I need to be in the middle.

I am sure that my family life did not help, It was really chaotic a lot of fighting with my parents and I was always uncomfortable and just got used to running out of the room when the fighting would start. I knew I had problems in school, because by the time the teacher was in the second thing, I had forgotten the first.

I got thrown out of my first attempt in college because I was embarrassed to tell people I had a learning disability. I always found it really hard to be different. This is helping me a lot. I lost my job during the pandemic, because I have underlying health conditions and my family and I decided I had to leave.

[Leenie0811 in reply to ShortyKat]

I’m sorry you’ve been through so much, especially during recent times that must be so tough. I have long term health issues too and the pandemic was so tough, I hope you are in a better place now! Some people still think adhd is a naughty kid so I can’t imagine what it was like growing up for you especially with the household you had. My parents split when I was really young but were amicable with each other when I was around. We had separate issues when they got partners but I always had my nanna (mums mum) who was that grounding, loving person.

Your not knowing when to speak in conversations made me laugh because I’m the same it’s either interrupting or completely losing what’s happening in a conversation! I hope you’re doing okay though x

[ShortyKat in reply to Leenie0811]

Thanks, my family is very helpful. They want me to get help, and try to be more together. Specifically because it will be better for me, and also because it is very stressful on them. My father does not help much as I am more like him and as he ages things are even harder on him. He didn't have the anxiety part so much according to him he would just say F those people.

Most of my family is really helpful, as I have tendencies for hoarding, and during the pandemic I had an unfortunate accident in a bouncy house and I broke part of my shin, and my family had to come into my house. My mom put her foot down, and said you must get rid of the extra crap, though some did come in handy when shortages of supplies started. My ma and my sis shop in my closet for free. I do want to get better, and more focused. Sometimes, music helps me focus.

Really trying not to get stressed out, because then I can't sleep and the more you worry about not sleeping, the more you can't sleep. Then I went to get meds filled, not for ADHD a heart ailment and the cost is crazy even with insurance which I have to pay for in Cobra. Very annoying. This adds so much stress. Thankfully, it is my only prescription.